Managing Your Epilepsy

Managing epilepsy is not just about taking medication. It is also important for you to look after your health, monitor your epilepsy and your response to medication and take care to stay safe. Getting involved in your care in this way can help you feel more in control of your epilepsy so that you stay well and can get on with your life.

The goal of epilepsy treatment is seizure freedom without intolerable side effects and this can be achieved for the majority of people. Almost seven out of ten people with epilepsy can become seizure free for at least one year on their first medication^[1], however, to achieve this takes a partnership between you and your epilepsy specialist.

Your specialist cannot tell by looking at you or examining you whether you have any problems with your medication or if you are getting seizures more often. He or she relies on you to keep them informed of how you're feeling, the number of seizures you're having (if any) and how treatment is affecting you.

One simple thing that can really help you is to keep an epilepsy diary of seizures, triggers and side effects so that you remember to mention these at your next doctor's appointment. You may need to talk to your specialist about options available to you to help manage your epilepsy better. It may even be possible to stop your seizures altogether. Of course, there are no guarantees and how one person responds to a treatment will be very different to another. But you will have started the process of exploring with your doctor the treatment options available to you.

Here are some other things that can help you live well with epilepsy:

• Keep track of how your treatment affects you. You might find it useful to note down in a diary any seizures or side effects you may have. This can help your specialist to decide if you need a different treatment or a higher/lower dose. It can also help you feel more involved in your care.
• Look out for things that trigger your seizures. Some people find that particular things trigger their seizures. Common triggers include stress, tiredness, alcohol and sometimes hormone changes in women. You might want to keep track of the things that seem to trigger your seizures and discuss these with your specialist.
• Finding an epilepsy specialist. A major association for physicians (the International League Against Epilepsy, ILAE) has published a list of epilepsy specialists in Germany.
• Keep appointments with your specialist. Prepare for your appointment. Think about what you want to ask your specialist. It can help to make some notes and a checklist so that you don't forget what you wanted to discuss.
• See your specialist if you notice any change in either the type of seizure or if you notice changes in your appearance or mood. Don't be afraid to talk to your doctor about other things that might be affecting your epilepsy. For example, going through a stressful time at work or having treatment for another health problem may affect your epilepsy or how your medication works.
• Ask about things you don't understand. There's a lot to learn about epilepsy and it can be hard to take in everything at once. If you don't understand something then ask someone. It may be possible to go over things with a nurse or make another appointment with your doctor if there is something you're unsure of.

[1] 70% of 423 people in the study by Kwan & Brodie 2000